View Full Version : I'm getting my 19th RTX infusion tomorrow!
Well I am finally in Cleveland tonight, to get my infusion tomorrow morning. My IgG is still a little low, but we are going for it. I'm really late on getting it done, supposed to have been in August, but had to wait for the IgG to come up. I just can't wait to get it over with and get back home to the country. I don't really like being around so much action and movement. :blink:
Dorothea
12-09-2016, 03:10 PM
Good luck to you Jaha! How long have you had Wegeners?
Dorothea
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Hope all goes well tomorrow. Be careful driving in the snow up there. Should be smooth sailing once you get south of Canton...
Debbie C
12-10-2016, 12:48 AM
Good luck Jana. I will be praying that this will help you feel better. Like Pete said be careful driving, if you need to take a break swing my Youngstown. This is your 19th infusion ??? I wonder if you can get too much of a good thing ? I have had 1 and they NEVER check my IgG. I have heard of this test before but what does it check for and does anybody else get it checked ?
Take care.. I will be thinking of you today :hug2:
Best of luck Jaha. I hope all goes well and you will be feeling a lot better just in time for the holidays.
Rose
I was dx'd in 2010, it was a long process to getting the correct disease. Cleveland clinic took all my biopsies and data and saved my life.
Deb, IgG has about four different parts to it, but this shows how at risk you are for getting any opportunistic infections. The only reason I had it done is when a new, more local Rheumy was going to do my infusion. He backed out after he did test and it was low. I talked with Villa-Forte today and she said they don't normally order it, because that being on press so long can make it low also. I'm having just one infusion today with 1000ml and then in another 6 months will have another, if all goes well.
They gave me IV Benadryl 50mg,120mg of Solmedral and 2 tylenol. So far so good! I can't wait to get out of here and eat and sleep. Thanks everyone for the caring words.
Well all was going well yesterday, until about half way through the infusion,I had a reaction to the Rtx. My throat started to feel scratchy, tight, tongue got thick, I started wheezing, had tightness in my chest and was SOB. They stopped the IV and called in the Doc. They then have me another round of Benadryl 50mg and 100mg Solmedral and waited to take effect before starting up again. I'm ok now, but have to take 2 tylenol and two Benadryl every 4 hrs for up to 36 hrs to keep any reactions down. I'm a bit shaky from all the steriods, but have no joint pain or pain of any kind! We are driving back home today, can't wait to be home, and our dog!
Debbie C
12-12-2016, 01:37 AM
Oh my Gosh Jaha, how scary that must have been for you, I am so glad they were on top of things and were able to get it settled. Glad to hear you are feeling no pain. Safe travels home and relax with hubby and dog and watch this freakn snow fall ! Did I ever mention... I HATE WINTER , I'm sure I have but the hatred is getting worse. Take care of yourself. I don't have an appt. yet to go back to CC. I am going to make one this week, it will probably be in April
MikeG-2012
12-13-2016, 02:05 AM
Well all was going well yesterday, until about half way through the infusion,I had a reaction to the Rtx. My throat started to feel scratchy, tight, tongue got thick, I started wheezing, had tightness in my chest and was SOB. They stopped the IV and called in the Doc. They then have me another round of Benadryl 50mg and 100mg Solmedral and waited to take effect before starting up again. I'm ok now, but have to take 2 tylenol and two Benadryl every 4 hrs for up to 36 hrs to keep any reactions down. I'm a bit shaky from all the steriods, but have no joint pain or pain of any kind! We are driving back home today, can't wait to be home, and our dog!
YIKES! Glad you got through it OK Jana!!
Take it easy and don't go play in the snow until you are feeling up to it! (-8
Alysia
12-16-2016, 07:46 AM
I only now read it. Sorry for the reaction Jana. Was is after 120mg steroids IV and then you got another 100 ? How do you feel so far ?
Are you taking another med in addition to rtx ? I am on rtx only, plus pred 5 mg. So 1000mg rtx was not enough to keep me in remission.
It was after the IV solmedrol and 50mg IV Benadryl. I'm just on steroids and Bactrium MWF and every 6 mos rtx. How much rtx do they give you every six months? It took me about 5 days to feel more normal and I am still a little exhausted. I will make sure I have them on time from now on even if my IgG is lower than it should be.
Alysia
12-17-2016, 06:10 AM
It was after the IV solmedrol and 50mg IV Benadryl. I'm just on steroids and Bactrium MWF and every 6 mos rtx. How much rtx do they give you every six months? It took me about 5 days to feel more normal and I am still a little exhausted. I will make sure I have them on time from now on even if my IgG is lower than it should be.
2000mg rtx every 6 months for me. Pay attention that its also depend on body weight. My weight is 60 kilo.
So rtx is your only immune suppresed med. Like me. Not counting pred. I tried 1000mg but it didnt stop the wg activity so 2 months later I got the other 1000mg and since then I am only on 2000mg.
Follow up to RTX
I had my monthly labs done on the 22nd and then had a PVP appt on the 27th. I haven't been feeling worth a darn since infusion. I woke up Christmas with a sore throat and have been having a lot of nerve and joint pain. When I saw my labs I was really confused, my see rate is good and so is my Crp but, my wbc, rbc and neutrophils are high. My Wbcs and neutrophils are really high, also my creatine is slightly elevated and my GFr is down to 50. I have no fever but I do feel like I have a cold. My pcp did a flu and strep test and all is good. Has anyone else experienced this after an infusion. I called CC and the doc is out she will call me when she gets back. I have never had these #'s go up after rd usually they go down. I am just looking for any answers.
Alysia
01-01-2017, 03:51 AM
Hi Jana. I am sorry for your pains. Few times right after the rtx IV, I became sick with an infections or viruses. For example, I had flu, stomach bug, UTI, throat infection. Wbc might point to an infection ? We are more fragile right after, because of the high pred IV and also after we spend lots of hours in the setting of the hospital which is full of germs and viruses. Please also check your urine. In culture. For me it was the case couple of times. How much is your creatinine ? Do you have kidneys involvement ? How are you feeling today ?
I feeling much better now, I did have an upper respiratory infection. The PCP have me some antibiotics. I did not originally have kidney involvement, but am getting some signs of it now, am going to have to see a nephrologist next, after the Neurologist and the Cardiologist. Thanks Alysia for your concern. I am starting to get blood in urine and creatine is starting to elevate slightly. This crap never ends, I guess it makes life interesting. Haha!
Alysia
01-04-2017, 06:06 AM
I feeling much better now, I did have an upper respiratory infection. The PCP have me some antibiotics. I did not originally have kidney involvement, but am getting some signs of it now, am going to have to see a nephrologist next, after the Neurologist and the Cardiologist. Thanks Alysia for your concern. I am starting to get blood in urine and creatine is starting to elevate slightly. This crap never ends, I guess it makes life interesting. Haha!
Oh, I am sorry. I hope it will not get to your kidneys. Blood in urine can also be UTI.
And yes, I know how it is when you have multiple docs to go to... I tell my GP that I am "the frequent flier" and that with all the "miles" that I "collected" at docs offices I should already get some free flight... mmm in "buisness" of course.
Hang in there. I hope you will recover soon and that your kidneys will remain good. Sending prayers ♡♡♡
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